As an individual with tuberous sclerosis complex (TSC), Keith Hall dedicated his life to helping others living with the same disorder. He was diagnosed at the age of 12 when his doctor determined that his facial angiofibromas were caused by TSC. In 1996, he began volunteering with what is now known as the Tuberous Sclerosis (TS) Alliance and went on to become a leading advocate for the TSC community. As a participant in the TS Alliance’s annual “March on Capitol Hill,” Keith learned about the role of the Tuberous Sclerosis Complex Research Program (TSCRP) in providing research funding dedicated to understanding the disorder and developing prevention and treatment strategies in the hopes of finding a cure. He advocated for continued funding for the TSCRP and later served as a Consumer Peer Reviewer for the program.
In July 2017, Keith passed away after a battle with cancer. As described in the TS Alliance’s Perspective magazine, he left behind “a legacy of caring for others and inspiring hundreds of children, teens, and adults with TSC to embrace life and live it to the fullest, despite any challenges they may face.” It was his personal experience with these challenges that gave him a unique perspective when reviewing grant applications – a perspective that he was able to share with other reviewers and which served as a reminder of the individuals living with TSC who are hoping for meaningful discoveries to help understand, treat, and one day cure the disorder affecting their lives. Committed to advocating for people with disabilities, Keith also recognized the impact that research funded by the TSCRP could have on other disorders.
Keith encouraged individuals affected by TSC to become involved: “Whether it is participating in a Community Alliance walk, joining a support call, participating in a clinical trial, making a friend on social media sites, or calling upon your politicians to support research funding, you will learn that there are, in fact, others like you out there and that you are not alone. Everyone can help make a difference. It doesn't matter how big or small, only that you never stop trying.” Keith’s major goals included addressing the needs of adults with TSC; increasing participation in the TSC Natural History Database – an effort initiated with funding from the TSCRP and now sponsored by the TS Alliance to document the impact of the disease on a person’s health over their lifetime; donating tissue for research; and making involvement in clinical trials easy for everyone.
In the months since his passing, Keith is remembered for his compassion and care for others, his kindness, and his tireless efforts, even in his last weeks, advocating for the TSC community. He offered encouragement to others living with TSC and their loved ones and served as an inspiration to so many of those affected by this disorder. Those fortunate enough to have known him lost a committed friend and passionate supporter. His impact on the TSC community will not be forgotten.
Last updated Thursday, July 26, 2018